Thursday, November 22
I am overwhelmed with things to be thankful for this Thanksgiving. I could try to make a list, but it would not be exhaustive. If it were this post would be too long for you to read! It is hard to even know where to begin, and I don't want to accidentally leave something out. So, I find this appropriate:
T - oday. Everyday with Drew and his sister is a gift, and holidays are especially meaningful with them. Listening to Drew's Sister say her Thanksgiving prayer was beautiful. ("Thank you for the birds that sing. Thank you God for everything. Amen.") I am thankful that we were able to spend the day with our immediate families and that both sides of our family get along so well.
H - omework! I never thought I would say that, but I am thankful for all of the homework Drew's three therapists give us! Drew has three of the best therapists around. He likes each one of them so much and responds very well with them. They all do an excellent job of showing us exactly what they are doing and then explain why they are doing it. They give us so many things to work on at home with Drew. We also appreciate how well the three therapists work together and coordinate his therapy's.
A - udiology and technology. I am thankful for the gift of cochlear implants and for the audiologist that works with Drew. She continues to do an excellent job of programming Drew's processors so that he is hearing optimally with his implants. She has been very responsive to any equipment issues or questions we may have.
N - ew sounds. I am thankful for all of the new sounds Drew has made, from repeating "ahh" in the days just after activation to the "da da da" sounds now. I am thankful for the possibilities each day brings. Drew's first word, understanding of a new word or concept. I am thankful that Drew has taught me to appreciate all of these things that so many others take for granted.
K - ids. I am thankful for all of the families in this area that are willing to share their kids with us! When you have a child that is newly diagnosed as profoundly deaf, one of the best things you can do is to meet older deaf kids who are listening and talking with their cochlear implants. Those kids gave us the hope we needed to carry on in the early days of Drew's diagnosis. We are thankful for every family that shared their kid with us.
F - amily. Especially my Mom. I don't know what I would do without her. She watches Drew and his sister while I am at work each day. She takes Drew to his therapy sessions and is his therapist every day of the week. She has learned so much about auditory therapy and works with Drew on a consistent basis. It is no stretch to say that Drew's successes are directly attributed to her spending so much time working with him. I am forever grateful.
U - ncovered Medial Expenses can be APPEALED! I'm so thankful that I have learned how to appeal denied medical coverage and how to write appeals. I am thankful that my insurance company has overturned their previous decision in all of my appeals thus far. I am also thankful to all those who have walked this path before, as I know I have fought far less coverage issues than others before me.
L - ove. I am thankful for my relationship with my husband. It is amazing how much stress can be put on a relationship when you bring a baby into the world. It is even more amazing how much additional stress is put on a relationship when you have a child with a disability. We have managed to make it through this, and our relationship is actually stronger today having gone through the past year. I am very lucky to have him in my life and I am thankful that he is the man my children call "Daddy".
Happy Thanksgiving to All!
Friday, November 16
Drew has quite the personality. I think he is saying "Dada" on purpose! Every time I ask him to say "Mama" he says "Dada". Actually, my daughter did the exact same thing. She said "ma ma ma ma" first and then went months before she said it again. It looks like Drew is going to follow in his big sisters' footsteps!
It's amazing to watch Drew's development. Not only is he developing his language but he's been working hard on his gross motor skills again this week. He stood on his own a few different times for three to five seconds. We have noticed a drastic improvement in his overall balance in the last week. He has been pulling up on the furniture for quite some time now, but he has always been shaky when standing. In the past week the wobbling is gone. He will also let go of whatever he is holding on to and will lean forward and catch himself on something else. He doesn't have to be holding on at all times anymore. And with walking...tremendous progress.
Did you notice his receptive language at the end? He seemed to understand "backward"! Drew's Dad and I are just amazed with what he understands. We are very proud of all the things our little boy has accomplished.
Thursday, November 15
Most women become mothers by accident, some by choice, a few by social pressures and a couple by habit.
This year nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen?
Somehow I visualize God hovering over earth selecting his instruments for propagation with great care and deliberation. As He observes, He instruct His angels to make notes in a giant ledger.
“Armstrong, Beth; son. Patron saint…give her Gerard. He’s used to profanity.”
“Forrest, Marjorie; daughter. Patron saint, Cecelia.”
“Rutledge, Carrie; twins. Patron saint, Matthew.”
Finally He passes a name to an angel and smiles, “Give her a handicapped child.”
The angel is curious. “Why this one God? She’s so happy.”
“Exactly,” smiles God, “Could I give a handicapped child to a mother who does not know laughter? That would be cruel.”
“But has she patience?” asks the angel.
“I don’t want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she’ll handle it.”
“I watched her today. She has that feeling of self and independence that is so rare and so necessary in a mother. You see, the child I’m going to give her has her own world. She has to make her live in her world and that’s not going to be easy.”
“But, Lord, I don’t think she even believes in you.” God smiles, “No matter, I can fix that. This one is perfect –she has just enough selfishness.” The angel gasps – “selfishness? Is that a virtue?”
God nods. “If she can’t separate herself from the child occasionally, she’ll never survive. Yes, here is a woman whom I will bless with a child less than perfect. She doesn’t realize it yet, but she is to be envied. She will never take for granted a “spoken word”. Nor, will she consider a “step” ordinary. When her child says “Momma” for the first time, she will be present at a miracle, and will know it!”
“I will permit her to see clearly the things I see…ignorance, cruelty, prejudice…and allow her to rise above them. She will never be alone. I will be at her side every minute every day of her life, because she is doing My work as surely as if she is here by My side.”
“And what about her Patron saint?” asks the angle, his pen poised in mid-air.
God smiles, “A mirror will suffice."
Friday, November 9
Drew has had some excellent therapy sessions over the past two weeks. He is obviously making all sorts of new expressive sounds daily and his receptive language is exploding. He understands up, down, on, off, open, close, push, pull and the list goes on and on, and it seems to expand daily. When presented with two animals and their respective sound he will select the correct animal, for instance picking up a cow when he hears "moo."
One night this week Drew and I were playing in the living room when Drew's Dad turned on the water for the bath tub. Drew looked up at me, indicating that he heard the water turn on. I said, "Drew, it's time to take a bath," and he took off crawling toward the stairs, crawled up the stairs and into the bathroom. I don't know what else to say: cochlear implants are amazing!
We had some friends and their babies over to watch the Ohio State vs. Wisconsin football game last Saturday (Go Bucks!). There were points where we thought the babbling was coming from our friends babies only to find that it was Drew talking!
I have of course tried to get all of this new babbling on video, but as soon as he sees the camera he stops talking! He is more interested in it than what he was previously doing. Video to come. I am working on it...
Thursday, November 1
Those that are traveling or are going to travel the cochlear implant path should know that the individuals' success with his or her cochlear implant is achieved with hours of therapy. You must learn to listen and process sound before you can begin to talk and communicate. There is only so much the doctor and audiologist can do; without learning how to listen, the recipient is not going to have optimal success with his or her cochlear implant.
Many insurance companies have guidelines for therapy. Some insurance companies will provide services for a certain number of visits in a calendar year while others set a dollar maximum. For example, Anthem/Blue Cross Blue Shield of Virginia, our provider, has a $500 maximum for speech therapy in a year. With a one hour therapy session costing $189, we reached our maximum in less than three visits. Most families, including ours, and especially those with young children, do not have the means to financially pay for this necessary therapy.
There is hope. I have been "battling" the insurance company over therapy coverage for several months and finally have secured coverage for Drew's therapy sessions. There is a specific insurance billing code for "aural habilitiation following a cochlear implant." This code recognizes that cochlear implant recipients must have listening habilitation. And it recognizes that the therapy the recipient is receiving is NOT speech therapy, but rather therapy to learn to use their new found hearing.
If you are having issues with insurance coverage for therapy, I implore you not to give up! Many insurance companies deny coverage on the initial try because they know that some people will not take the time and energy to appeal. Many times making just one phone call can secure coverage. If not, you can always make a written appeal requesting coverage. And, you can utilize your physician and audiologist for medical documentation and support.